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Don’t Get Ticked Off Over Chronic Lyme Disease

There is a segment of the medical profession that considers Lyme disease as a prevalent cause of chronic fatigue and pain—even in the absence of evidence of Lyme infection. What is going on here?

Many of these individuals reject the criteria for diagnosing Lyme disease as put forth by the Centers for Disease Control and Prevention (CDC) and the Infectious Diseases Society of America (IDSA). These health professionals use the term “chronic Lyme disease” to explain symptoms such as chronic fatigue, chronic pain, and cognitive dysfunction in the patients who come to their clinics. Other symptoms noted on chronic Lyme internet sites include reproductive organ pain, back pain, sleep difficulties and moodiness; these are symptoms you just won’t find when you consult the Lyme disease web pages addressing diagnosis for the CDC or the IDSA.

Yet, while most of the patients labeled with chronic Lyme disease do not fulfill, say, the IDSA criteria for the diagnosis of Lyme disease, there are physicians and others who administer intravenous antibiotics for extended periods of time over and over again, despite the absence of randomized controlled trials to support such prolonged therapy; and in spite of any concerns the medical community at large has about the risk of the development of resistant strains of bacteria in the face of repeated and unnecessary exposure to antibiotic therapy.

Lyme disease is caused by the bacteria, Borrelia burgdorferi, introduced to its victims by the eastern deer tick known as Ixodes dammini. The disease can manifest as inflamed joints, inflamed heart tissue, and can cause neurologic disease in 10% to 15% of patients. Common manifestations seen in neurologic disease include meningitis, cranial nerve inflammation, inflammation of peripheral nerves leading to the inability to fully use a limb, and painful inflammation of nerve roots as they branch off from the spinal cord. The diagnosis of neurologic disease requires objective evidence of nervous system damage, and must be differentiated from psychiatric disorders and metabolic disorders—both of which can occur in the absence of obvious neurologic damage or infection. Treatment with antibiotics over a two to four week period generally results in microbiologic cure, and in most cases oral regimens are just as effective as their more expensive intravenous counterparts. While some symptoms may persist after antibiotic treatment, including chronic fatigue and concomitant cognitive or memory deficit, the data, according to a 2011 article in “Current Infectious Disease Reports,” do not suggest that these symptoms are responsive to further antibiotic therapy.

According to a 2007 “New England Journal of Medicine” article on “chronic Lyme disease,” prolonged antibiotic therapy appears to do nothing for nonspecific symptoms such as fatigue, night sweats, sore throat, stiff neck, joint and muscle pain, depression, sleep disturbance, poor concentration, and depression—regardless of whether Lyme disease is common in the environment of the patient. In fact, data from three double-blind, randomized, placebo-controlled trials have shown that there is substantial risk, with little or no benefit associated with additional antibiotic treatment for patients who have the aforementioned chronic subjective symptoms after they have been administered appropriate treatment for an episode of Lyme disease.

Of course, what does someone—patient or provider—who is wedded to the existence of chronic Lyme disease and the prolonged antibiotic therapy of that phenomenon do when confronted with not just a lack of evidence for the treatment of a possibly non-existent medical condition, but several negative published studies concluding that treatment is futile and possibly dangerous? Well, you turn to anecdotal reports and uncontrolled studies that support your beliefs.

It should be remembered, however, that response to treatment should not be considered as an undeniable indicator that a diagnosis is accurate, nor proof that the antibiotic is having an effect because it is killing bacteria. As you might imagine, many patients will feel better over time; and controlled trials indicate that nearly 40% of patients with post-Lyme disease symptoms have a positive response to placebo. (If you are not familiar with the placebo effect, that is a considerable effect.) Also, some antibiotics have significant anti-inflammatory effects: for some, the administration of certain antibiotics is akin to taking Celebrex or Motrin, which can be great pain relievers. Finally, uncontrolled trials and anecdotal case reports often do not use standardized definitions of the disease they claim to be studying, and their criteria for interpreting laboratory results might not involve validated methodology.

An empathic health care provider will need to explain the problems with the theory of chronic Lyme disease, and do what should be done whenever a patient comes in for the evaluation of chronic pain and fatigue: provide support, embark on a thorough medical evaluation, and gently advise them that the proffering of cures when there are none can result in further medical problems if certain cures are accepted. Successful interactions between patients and physicians will hopefully allow the patients to keep both their health, and their money.

Really there are no studies that prove the velocity of the bacteria called borrelia. Might want to start with Dr. Max Appel"s studies using dog model. He won a Nobel peace prize. Did I mention how long ago this was. Yes you have doctor beside your name but we can read. Another article not worth reading.

Invite u Dr. To come live at my home where my entire family is suffering from this disease and its co infections, which was contracted from our yard. Would like for you to get lyme and its wonderful co-infections go undiagnosed for YEARS and then obtain treatment, then give us your opion.
Maybe if you experienced what hundreds of thousands of people are living with you would have a different perspective and different evidence.

I created the following petition on behalf of the families devastated by Lyme disease who have witnessed first hand a community of physicians influenced by the CDC’s ongoing disinformation campaign aimed at promoting the idea that Lyme is little more than a nuisance disease. (12,500 signatures and growing)

I am an avid reader of Psychology Today, and was quite shocked by the uninformed article written by Dr. Borigini. It is quite clear, and has been for years, that in fact persistence of Borrelia is a fact - it's been established. It is also a fact that ticks transmit many diseases, not just Lyme. Unfortunately that means patients get a powerful polymicrobial mix - some coinfections like Powassan virus kill 30% of victims, Babesiosis, 20% morbidity. Borrelia Mayomotoi was discovered recently which presents like lyme and clearly is much more difficult to eliminate. I admit keeping up with science is certainly a challenge, and clearly, this author is struggling. Ignoring the facts in your editorial process produces garbage and undermines the credibility of this journal. The tone of this article is disparaging, unscientific and harmful to any science based debate. The underlying evidence behind the CDS/IDSA guidelines on LYME disease,is opinion, not proven. Since when does science stand still? have you looked at the thousands of thousands of studies taking these diseases systematically apart? Obviously not. They demonstrate how Lyme/Borrelia evades the immune system, sets up house in the lymph nodes, turns into cysts, only to disseminate later. This alone is one nasty, intelligent bug - combined with the plethora of other bugs - a devastating set of diseases for which we still have no cure. This article is beneath a quality science magazine. If I continue to see such quality, I will be cancelling my subscription.

I am utterly shocked that Psychology Today is publishing an article from somebody who has clearly, so drunk the Kool-aid spit out years ago, that he hasn't bothered reading the literature or seeing patients who might have updated him. There is a large literature, and a huge number of suffering patients, who are evidence that Lyme disease is more like syphillis, another spirochete, than not, and that tertiary lyme, called Chronic Lyme disease by some, but more adequately described as stage III Lyme (see CDC) is here and here to stay, if we do not begin treating people aggressive early in the disease. This is an illness where the early stage is often missed, because the screening test has high specificity and low sensitivity, rather than the reverse. The "typical"bulls eye rash occurs in a small percent of people, and many people are misdiagnosed early, and go on to have severe neurological or arthritic symptoms. Not everybody treated responds, either, to the recommended 10 day course of antibiotics. To publish such an unscholarly article by someone who clearly does not see much of this illness, and definitely doesn't read about it, is not what I expect of this respected magazine.

Of the 4 reported double blind placebo controlled "re-treatment" trials funded by the NIH, two studies that specifically looked at repeat antibiotic impact on fatigue in patients with chronic lyme disease showed statistically significant benefit in that clinical parameter. Perhaps it would be helpful to get those facts straight. It would appear that a literature review may be in order. Although much remains to be worked out in the management of individuals who remain sick after treatment that was thought to have been sufficient, progress will not be made by addressing each individual's situation with preconceived limitations on what they may or may not have as the basis for continued illness. An open mind and broader knowledge of tick-borne disorders would be far more beneficial. Treatments can be safely administered whether they are long-term antibiotics or cancer chemotherapy by physicians who vigilantly follow up their patients and work effectively as a team with patients in the patient's best interest. Neither patient nor physician can abdicate responsibility for close follow up. It is easy to be seduced in medicine by the very limited number of conditions for which we have very specifically defined treatments and testing. I assure you that those are the minority conditions. And even in those, each individual IS an individual. This article helps enlighten neither patients who are struggling nor their physicians who are struggling to help.

I am hugely disappointed in this article.
Having worked with Lyme for over 10 years and watching the brainmaps get worse and worse over a larger and larger population, especially the autistics, I am stunned.
Anyone knows that there are risk groups for infections of the central nervous system: infants, seniors, and prior infections, concussions, high fevers, developmentally delayed.
We all reach a point of no return with our central nervous system and as a population, we've obviously reached that point with all the chronic illness around us.
Lyme taxes the system just as syphillis did and much more than many other pathogens. To deprive the population in these high risk groups the precautions and warnings they need, not to mention the care, is neglect.
Again, very disappointed to see a poorly researched opinion on Psych Today of all places.
As a neuroscientist and neuropsychology specialist, it was a disappointment and really should be retracted before it causes much more disinformation to those who can lease afford it.

I do understand that the infectious disease society is trying to stop the spread of antibiotic resistant bacteria. That said, there are over 108 bacteria that were found in ticks in Italy and that did not include the myriad of viruses, protozoans and other parasites that are within that tick. Once the immune system becomes compromised lyme patients show up with the opportunistic infections of AIDS patients. They might even be dubbed NON HIV AIDS patients. Mark, I would hazard to guess that you have not done much research on this topic and have proffered opinions without a serious study of the matter. Many of the pathogens are not able to be tested for in our standard labs which contributes to the problem and even with tests they are less than reliable. Borrelia miyamotoi for instance is not showing up positively on Western Blot or ELISA testing. Powassan virus can not be tested for in commercial labs. I have shown marked improvement with a longer term course of antibiotics targeted for the pathogens I have discovered and so have many in my family. Given that I am quite a skeptic I do not think I am subject to any placebo effect. I can post a few research articles here for you to peruse and educate yourself. Many of the infections in lyme patients are CHRONIC infections. Do you really want to say that BRUCELLA, COXIELLA BURNETTI,MYCOPLASMAS AND CHLAMYDIAS are not chronic infections ? I also want to test lyme patients for Rhodococcus equi for it also seems to be problematic for immune compromised individuals and shows up in AIDS patients.

Please contact David Leiby, Phd at the American Blood Cross Blood services and he will inform you that we do not currently have any accurate testing for Babesia. Quest has tests for B. duncani and B. microti but we do have B. divergens here in the US and there is no test for that one. In addition, many kinds of Bartonella can not be tested for as well. Our blood supply is full of tainted blood and one man who donated in my State almost killed quite a few who received his blood full of Ehrlichia ewingii. Do you really feel qualified as a rheumatologist to write this article ? Psychology Today needs to vet their writers a bit more carefully.

The aim of this study was to investigate the seroprevalences to zoonotic pathogens in hunters, to propose preventive measures and to obtain more information about the occurrence of zoonotic pathogens in local wild animal populations. From 146 male and 3 female hunters originating from the south-eastern Austrian federal states of Styria and Burgenland blood samples were taken and anamnestic data were obtained using a questionnaire. The serological investigations included the following viral, bacterial and parasitic zoonotic agents or zoonoses, respectively (antibody-seroprevalences in brackets): encephalomyocarditis virus (EMCV, 15%), Puumala-Hantavirus (10%), Newcastle Disease virus (NDV, 4%), borreliosis (IgG 42%, IgM 7%), brucellosis (1%), chlamydiosis (3%), ehrlichiosis (IgG 15%, IgM 3%), leptospirosis (10%), tularaemia (3%), Q fever (0%), Echinococcus multilocularis/E. granulosus (5%/11%), toxocariasis (17%). Out of a control group of 50 persons (urban population, no hunters) only one person was found to be seropositive for Toxocara canis and NDV and four for EMCV, all other results were negative in the control group. The high seroprevalences especially to Borrelia burgdorferi s.l., Ehrlichia spp., Leptospira interrogans, E. granulosus, E. multilocularis, encephalomyocarditis virus and Puumala virus demonstrate that hunters are particularly exposed to zoonotic pathogens. It should also be noted that one hunter was seropositive for Brucella abortus and five exhibited antibodies to Francisella tularensis. In these cases, as well as in the cases of the 15 seropositives for Leptospira interrogans, the suspected source of infection may--besides rodents--also include wild boars and brown hares. The infections with NDV and Chlamydophila psittaci may be traced back to contact with certain species of birds (potential risk: aviaries). For Hantaviruses, rodents are considered to be the main source of human infections

encephalomyocarditis virus (EMCV, 15%), Puumala-Hantavirus (10%), Newcastle Disease virus (NDV, 4%), borreliosis (IgG 42%, IgM 7%), brucellosis (1%), chlamydiosis (3%), ehrlichiosis (IgG 15%, IgM 3%), leptospirosis (10%), tularaemia (3%), Q fever (0%), Echinococcus multilocularis/E. granulosus (5%/11%), toxocariasis (17%). Out of a control group of 50 persons (urban population, no hunters) only one person was found to be seropositive for Toxocara canis and NDV and four for EMCV, all other results were negative in the control group. The high seroprevalences especially to Borrelia burgdorferi s.l., Ehrlichia spp., Leptospira interrogans, E. granulosus, E. multilocularis, encephalomyocarditis virus and Puumala virus demonstrate that hunters are particularly exposed to zoonotic pathogens. MARK, THESE PATHOGENS ARE NOT GOING TO BE ERADICATED WITH 14 DAYS OF DOXYCYCLINE. No matter how we might wish them to be cleared it is not going to happen.

This paper is intended to be a general guide about diseases that hunters and their hunting dogs may encounter. Links to additional information have been provided where appropriate. Hunters should always consult their physician if they are concerned they have been exposed to a disease or are showing symptoms of illness. If there are any concerns that your hunting dog or any other companion animal may have contracted any of these diseases, please contact your veterinarian.

Mark, here are just a few pathogens that hunters and outdoor enthusiasts and their animal companions are exposed to in the great outdoors. Notice that the whole list will not be eradicated with any amount of doxycycline. The raccoon roundworm if it enters the nervous system is quite deadly. Study and then write a scientific article that presents the truth about tick borne pathogens. Infectious disease society guidelines should be used to line the animal cages at the CDC, NIH, NIAID but not to be relied upon to understand or treat lyme patients.

In addition to neglecting to mention co-infections as a component of chronic Lyme, the author should have read & cited Dr. Monica Embers' 2012 Primate Study & recent piece from The NY TIMES which contradicts the ISDA/CDC guidelines and the studies he cited.

"Much of the controversy over Lyme disease centers on the patients who experience chronic illness. When Lyme is caught late, patients may continue to have lingering symptoms even after antibiotic treatment.

Research on primates has shown that the Lyme-causing bacteria can physically remain even after antibiotic treatment.
While it is still unknown why these patients experience chronic symptoms, our research on primates has shown that the Lyme-causing bacteria can physically remain even after antibiotic treatment. We still need to determine whether the remaining bacteria are capable of causing disease or if they eventually die off.

It’s clear, though, that when the bacteria remain in the body for a long time, they disperse and are harder to detect. For instance, if the bacteria are hiding in the joints in a dormant state, they can’t be detected from a blood sample.

The current diagnostic tests for Lyme, which detect specific antibodies in the serum, are most reliable after the infection has disseminated — one to two months after the tick bite. Meanwhile, the antibodies produced in response to the bacteria change over time, and with treatment. So tests vary in reliability depending on when blood samples are taken and by the type of antibodies being tested.

We need to develop tests that can be used to diagnose patients at all stages of this disease. Physicians also need specific tests that can distinguish patients with ongoing infection from patients who have been cured. Finally, because laboratory confirmation of infection is essential to justifying treatment of Lyme disease, doctors need better tests that can distinguish Lyme infection from other unrelated illnesses that produce similar symptoms.

Research using mice, dogs and monkeys has shown the persistence of the Lyme bacteria. Further study into how this disease manifests in animals could allow researchers to evaluate and, perhaps significantly, improve the reliability of blood tests for Lyme disease."

Fist this dude went after CFS patients, now it's Lyme patients. What exactly does he treat because he seems to spend a lot of time telling multiple patient groups that they're not really sick. I'd love to know who is paying him.

Investigate The Biowarfare Pathogen Leak From Plum Island Animal Disease Center, NY,
Being Used to Conduct a Large-Scale Vaccine Development and Marketing Exercise (Tuskegee Phase-II Treatment-Denial, Under The Cover of National Security)

First it was the New York Times, then Consumer Reports, then the Washington Post and now Psychology Today. All articles regurgitating the same old nonsense dispensed by the CDC and IDSA. Did anyone contact ILADS, contact any MD's treating chronic lyme to learn about the results that they get? Do a search online and read the thousands of similar stories of ignored and suffering patients? The same story is told over and over and over again. Traditional western medicine offers no help to these patients, but when finally get treatment from a doctor brave enough to dispense antibiotics and/or herbal remedies, finally get well. Apparently 3 (dubious) studies are enough to say case closed. Where would we be if we treated cancer, AIDS, Parkinsons, heart disease, etc. with the same standards? Nowhere. That is where so many patients are left. Your sloppy, lazy journalism is a disgrace. Within the next decade you will be proven wrong. What a shame to be a part of such disinformation and allowing more people to get and stay ill.

This is ridiculous. What an uneducated article. People like this man are the reason why my father is still suffering from this debilitating disease. The more awareness about this REAL disease would help so many people. More awareness, more research (which clearly he did NONE), better treatment, possible cure. My family thanks you so much for writing this. Thank you for making it harder. Two steps forward, and some fool pushes you one step back.

When a dedicated doctor has spent his career treating disease, including chronic pain, based on an old paradigm, it is impossible to see the truth of a new paradigm. For if the new paradigm is true then much of what the good doctor has been doing for years is invalid since it has been based ona faulty paradigm. If fibromyalgia is caused by Lyme disease, as suggested in a subsequent article in Pyschology Today, it would mean the doctor has been practising poor medicine for so many years. But the doctor believes deep in his soul that he is a good, or perhaps great doctor, judging by his CV. This places our doctor at the crux of a fundamental determinant of human behavior. Cognitive dissonance. Rather than admitting he has been practising less than perfect medicine, the doctor and his ego, must change the facts.(Rather than convictions about his medical practice and his own character). Chronic Lyme disease then does not exist.

Nothing presented in this article is original or the product of critical thinking. It is a carbon copy of the same tripe spouted off by many others in the world of medical academia. As the saying goes: there is none so blind as he who will not see.

The science is complex. But studies in animals show us Lyme spirochetes cannot be eradicated in mice, dogs or primates. Humans are not different. The bacteria are pleomorphic. They change their form into a cyst to evade immune defences and antibiotics. The germs hide within biofilm communities. The spirochetes are anerobic and do not use oxygen for respiration which allows them to penetrate tissues with poor blood flow like cartilage in joints. Spirochetes, including Lyme and syphilis are amongst the only bacteria which readily cross the blood-brain barrier permitting entry into this critical immune privileged region.

The studies he mentions are riddled with holes and their conclusions widely critiqued.

Lyme disease is the plague of our times. It is an insidious disease which frequently leads to untoward disability and pain, psychological - psychiatric-neurological disorders. A suicide because of Lyme disease was recently reported in the media. Unfortunately this is not rare.

While academic doctors repeat the mantra of this article, things are changing on a political level. Why? Because non-physicians can see the suffering of those afflicted with illness because they have not been taught that the disease doesn't exist.

Doctor, please open your eyes. We know you care deeply for your patients.The remainder of your career is still salvageable.